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RA Diaries: Owww — please don’t touch me!

For me, having rheumatoid arthritis means I have chronic joint pain. But I must clarify that chronic doesn’t mean constant — I have deep sympathy for anyone in constant pain, and have had just a brief taste of that hellish condition when I dealt with sciatica last year.

Whether or not I have pain has everything to do with how much rest I got, whether it’s raining, whether I spent way too much time wandering around the mall or too much time on my feet cooking. Fortunately, though, the pain is mostly manageable with non-steroidal anti-inflammatories.

But it’s not just about pain. There is also stiffness and inflammation, and those aren’t always as manageable with drugs. They’re also a bellwether for possible pain to come.

Because of that, I’ve never been a very touchy-feely kind of person. Mind you, it’s not that I don’t like to be touched — physical contact is important to me, and snuggling with my spouse is something I make sure to do daily. It’s just that, if you touch me the wrong way — say hug me too hard or grab my elbow or hand the wrong way — it can really hurt.
This is hard to explain to some people, even people who should really know better.
Case in point: my close relative. This relative has always been rather rough and impatient, and when I was a child, did not feel the need to coddle me or even acknowledge my RA. Therefore, this scenario would play out pretty often at my house:

Close relative grabs sore shoulder, hand, elbow, in order to hug, kiss or show other sign of affection.

Me: “Owww!”

Close Relative: “I’m not hurting you! Why are you saying oww?”

Me: “It hurts.”

Close Relative: “No it doesn’t! Stop lying!”

Close relative stomps off in a huff. Other close relative then gives me a lecture about being mean and asocial. I am admonished to apologize.

Rinse and repeat.

Now, before anyone calls DCFS retroactively, the close relative has since apologized for being so insensitive to my sore joints. I have accepted the apology, and have no compunction about informing this close relative when I am sore and could be in pain. And I’ll be damned if I will ever apologize for being in pain to anyone, ever again.

But the close relative is just one of several adults who treated me this way as a child.

Several factors were at play here — one is that, as abled and healthy people who didn’t have pain, they simply couldn’t relate. Another is that, even if they had pain, they couldn’t wrap their minds around the idea that a child could have chronic pain. I remember one gent — and no, he didn’t grab me or hurt me — who, after hearing I had RA, refused to believe it.

“It’s not possible!” he kept saying.

Oh, okay. Thanks?

The biggest thing is that, in general, adults don’t think it necessary to respect children’s physical boundaries. It’s fine to pick up a kid, or grab them and cuddle them, or push them aside as needed. Adults touch kids in ways they would never dream of touching adults.

I’ve been guilty of this myself — how many friends’ babies’ heads have I nuzzled? (Baby heads are the best for nuzzling. So downy and soft and sweet. So far from possibly stinky diapers or sticky hands.)

And kids get so used to being treated like they have no right to boundaries that we have to give them lectures about “good” and “bad” touch.

Unfortunately, it doesn’t get much better when you grow up — at least if you’re female. As a woman, you get resigned to the fact that your body is a public commodity, to be ogled and criticized and rated. And when you’re pregnant, it’s open season on your belly.

On top of that, women are expected to be more touchy-feely than men. We’re expected to hug friends and strangers, to kiss on the cheek and comfort and hold hands.

So, my being leery of physical contact, because it may injure an already sore joint, often makes me come off as asocial. Even a harmless handshake is fraught with anxiety, since both men and women (mostly men, though) think finger crushing is a sign of strength.

So what to do? I have yet to come up with a good solution. My friends and acquaintances are familiar with my plight, so they’re sympathetic. But strangers? I have no particular inclination to discuss my health issues with them. I also don’t want to walk away in pain. And I’m going to have to come up with something good very soon, since I have a few work-oriented schmooze sessions coming up this month.

Maybe a double dose of meds will help. Or I can hope it won’t rain.

All text copyrighted by A.K. Whitney, and cannot be used without permission.

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7 comments

I am here from Shakesville. This is an interesting piece and something that I haven’t put much thought into before. Thanks for shedding light on it for it.

I do however take issue with this part: “And kids get so used to being treated like they have no right to boundaries that we have to give them lectures about “good” and “bad” touch.”

It is very possible that part of this is due to boundaries, but mostly because most children who are victims of sexual abuse are being offended on by close relatives or friends of the family who convince them that the touches are okay or good. I regularly give presentations to elementary schools about good touch and bad touch and children who are victims of abuse usually know quite well that the touches are bad – but they are afraid to tell on the perpetrator or they are unsure of who to tell.

Just a thought I had. Otherwise, I think this is a great point. I too nuzzle kids and do things that I would never do to adults (like pull them on my lap).

You’re right, Katelyn. I should have phrased that better. Kids do know when a touch feels creepy or wrong. It’s more that so often, they are treated like their boundaries don’t matter, so they doubt themselves, especially when it’s someone they’re supposed to respect. I know that’s happened to me.

I am glad I read this tonight. I love hugs, and the other day while saying goodbye to a group of friends I jokingly scolded one for not giving me a “real” hug, and then made him do it again. It wasn’t until after that I realized he was uncomfortable giving close, strong hugs. I was ashamed to have forced him to “redo” his “not real” hug in front of a group of people. Thought it was for reasons other than chronic pain, your post has given me some more food for thought in terms of how physical contact effects different feelings (physical and emotion) for different people for different reasons.

I really appreciate this post. As someone living with chronic mental illness, physical intimacy can be hard for me to deal with. In particular, when I’m going through an episode, being touched can exacerbate already-severe feelings of disassociation. And as you might imagine, being in that state can make it difficult for me to articulate why I don’t want to be touched, especially when the people around me are pressuring me to accept hugs and so forth because they “just want to help”.

As for what to do? I wish I had an easy answer… even addressing this with family and close friends has been difficult for me and not entirely successful. What’s worked best for me in public situations has been having an ally to back me up. People who “get it” have helped to make it clear to others that it’s ok for me to have boundaries without getting into the details of why those boundaries are there in the first place. But I know not everyone is fortunate enough to have allies with them… I certainly don’t have that all the time.

This article brings up several interesting points about social touching that have long irked me. I have never minded being hugged, patted on the shoulder or kissed on the cheek by friends, but I really, really hate it when co-workers assume this right. It’s always awkward for me, even when it’s someone I’ve worked with for a long time. Especially when it’s a man who goes in for the social kiss and hug, and I end up sandwiched around his neck/chest. ICK. I try to maintain a polite distance and am always first to extend my arm for a handshake, but some people just don’t get the hint.

Anyway, sorry you had to put up with the denial and shaming growing up. That must have been really hard to deal with.

For me, to keep people from crushing my hand when they shake it (especially during those schmooze sessions), I wear fingerless gloves. It usually surprises people when they don’t feel skin (or to see that my hands are wrapped in cotton), and keeps them from using a crushing grip. If someone asks why I wear them (most don’t), I just say that my hands are cold, and they leave it at that.

Double plus is that the gloves help to keep my hands warm and comfortable while leaving my fingers free to move stuff. And I have them in a few different styles, so I can dress for the occasion.

After suffering for far too long, I’ve developed a coping technique. I make sure to inform someone if it look like we’ll be spending more than 15 minutes together, that “I have some physical issues which make it unwise for me to be touched. Let me show you my ‘air high five’.” The person raises their palm, and I’ll raise mine, stopping around four inches away. We both laugh; they have a memorable & permitted way to interact with me.